New to MS
BJ
Your group has been recommended to me by a friend who says you've been
around for a ages..
I am a 23 year old female new to MS, I've recently been diagnosed with
RRMS after a spinal tap and MRI scan, and currently taking betaseron.
Although I will always stay on betaseron I am considering adding other
complementary therapies,.and after weeks of surfing the net, I found
LDN and a low sat fat diet very interesting.
I was hoping someone from this group with experience could share their
view on helminth therapy, after coming across it on the net I was
majorly grossed out! however before completely dismissing the idea
thought I would ask here first. There is a yahoo group on the subject
matter but I am afraid the comments would be biased, hence my reason
for coming here.
Any feedback would be greatly appreciated.
BJ
evilzona
a good site to read about LDN
http://lowdosenaltrexone.org/
BJ
Thanks Evilzona for the awesome LDN site.
With FDA approval and positive trial results this certainly seems a
legit therapy.
BJ
evilzona
>
> - Show quoted text -
yes, but I wouldnt hold your breath.
trials are happening, but naltrexone is already fda approved.
You do what you have to do, and you use what helps, fda/trials or not.
I hope you have good results with betaseron, but the sad truth is that
current
mainstream meds only work for about a third of those who use them, and
only about a third of the time.
And now there is research going on that is challenging the theories
that mainstream meds are based on.
Most doctors dont have a clue how to treat MS, they rely their scrip
pads.
D_Fru...@ndersnat.ch
> Thanks Evilzona for the awesome LDN site.
> With FDA approval and positive trial results this certainly seems a
> legit therapy.
Alas, those two things have yet to appear. I hear that there are
*finally* some objective scientific tests of LDN underway, but the
results are still some time off.
There are some on this group who believe strongly in LDN, and others
who believe strongly that in the other direction. You will probably be
sorry if you get into it with either side - a little bit like what you
would experience if you started in on either side of the question of the
usefulness of helmets over on the bicycling groups.
The best advice for any newly diagnosed MS patient is to not get
discouraged. It's a nasty disease, but there are numerous treatments
being studied, and we get closer to a cure every day. (For news on a
*possible* amazing breakthrough, Google "CCSVI" sometime.)
Have you gotten involved with your local MS Society chapter yet?
Most of them have support groups for the newly diagnosed. Sometimes
it's good just to know that you're not alone.
Also, the Beta-serone people (and the Rebif people - the two are
similar, and my daughter has had a great relationship with both) sponsor
all sorts of newsletters and seminars. You probably learned to give
yourself shots from a nurse and probably got contact info from him/her.
Make use of it. You are not alone in this!!
Good luck,
Bill
evilzona
You're comparing discussions on medical treatments for a chronic
illness with discussions
on whether or not you should wear a helmit when you're riding a bike??
Sometimes ignorance is so blatantly obvious!
This is why most people WITHOUT the disease shouldnt try to give
advice.
BigArtie
"evilzona" <davei...@gmail.com> wrote in message
news:2c1c5cd9-bde3-4d4a...@1g2000vbe.googlegroups.com...
yes it is
BJ
> On Dec 19, 1:35 am, BJ <bjwig...@gmail.com> wrote:
>
>
>
> > Thanks Evilzona for the awesome LDN site.
>
> > With FDA approval and positive trial results this certainly seems a
> > legit therapy.
>
> > BJ
>
> > > > Hi
>
> > > > Your group has been recommended to me by a friend who says you've been
> > > > around for a ages..
>
> > > > I am a 23 year old female new to MS, I've recently been diagnosed with
> > > > RRMS after a spinal tap and MRI scan, and currently taking betaseron.
>
> > > > Although I will always stay on betaseron I am considering adding other
> > > > complementary therapies,.and after weeks of surfing the net, I found
> > > > LDN and a low sat fat diet very interesting.
>
> > > > I was hoping someone from this group with experience could share their
> > > > view on helminth therapy, after coming across it on the net I was
> > > > majorly grossed out! however before completely dismissing the idea
> > > > thought I would ask here first. There is a yahoo group on the subject
> > > > matter but I am afraid the comments would be biased, hence my reason
> > > > for coming here.
>
> > > > Any feedback would be greatly appreciated.
>
> > > > BJ
>
> > > a good site to read about LDNhttp://lowdosenaltrexone.org/-Hide quoted text -
these I am going to look at adding other therapies for sure!
Trying LDN I certainly have nothing to loose and everything to gain.
Thanks
BJ
BJ
> BJ <bjwig...@gmail.com> wrote:
> > Thanks Evilzona for the awesome LDN site.
> > With FDA approval and positive trial results this certainly seems a
> > legit therapy.
>
> Alas, those two things have yet to appear. I hear that there are
> *finally* some objective scientific tests of LDN underway, but the
> results are still some time off.
> There are some on this group who believe strongly in LDN, and others
> who believe strongly that in the other direction. You will probably be
> sorry if you get into it with either side - a little bit like what you
> would experience if you started in on either side of the question of the
> usefulness of helmets over on the bicycling groups.
> The best advice for any newly diagnosed MS patient is to not get
> discouraged. It's a nasty disease, but there are numerous treatments
Hi Bill,
good point, I will try not to become the meat between the sandwich
with opposing opinions.
my doc gave me a leaflet about the MS Society, I was under the
impression they were a fundraiser organization selling raffle tickets
in shopping malls and that they would put me to work,. haha obviously
I was wrong, I will give them a call and organize a meeting.
I goggled CCSVI , way promising, utube had some great info with people
talking about it in more detail.
yes I got info leaflets from my beta nurse and will also make use of
them soon, also got a very handy self injected spring loaded gizmo
Thanks for the advice
BJ
BJ
Thanks for the confirmation BA from BJ
LOL
On Dec 20, 6:31 am, "BigArtie" <XXX@.com> wrote:
> "evilzona" <daveino...@gmail.com> wrote in message
D_Fru...@ndersnat.ch
> You're comparing discussions on medical treatments for a chronic
> illness with discussions
> on whether or not you should wear a helmit when you're riding a bike??
> Sometimes ignorance is so blatantly obvious!
> This is why most people WITHOUT the disease shouldnt try to give
> advice.
Actually, I was referring to the endless, irrational round and round
flame wars that both subjects seem to lead to when people get involved
to arguing over them. Spend some time on a bike group, and you'll
either see such a flame war, or hear it mentioned. Some people are
afraid even to say the word, using a euphemism like h*lmet, just because
they don't want to start another round.
Bill
BigArtie
<D_Fru...@ndersnat.ch> wrote in message
news:hgj5db$su5$4...@news.xmission.com...
LDN has been around for over 20 years
safe, effective, inexpensive
much anecdotal evidence showing it successfully treats MS
of course you slam it
and what do you push?
CCSVI!
something that has just been discovered and totally unproven
and then you promote the NMSS?!!
they are an MS'ers worst enemy
them...@webtv.net
Re: New to MS
Date: Sun, Dec 27, 2009, 1:43pm
LDN has been around for over 20 years
safe, effective, inexpensive much anecdotal evidence showing it
successfully treats MS of course you slam it and what do you push?
CCSVI!
something that has just been discovered and totally unproven and then
you promote the NMSS?!!
they are an MS'ers worst enemy
---
I agree with you Artie about the NMSS. They are like a dysfunctional
parent living off their "kids" - since it is the local chapters who do
the fund-raising and send $ to the NMSS!!
Btw, sorry about your lesions in the pons. I have at least one there
myself. I think it was prolly the reason for 6 mos. of high blood
pressure that came out of nowhere about a year ago. Then when it
"remitted", the Lisinopril almost took me out!! Have had my usual great
b/p since then. Don't know for sure. I'm not a medical professional. But
the neuro doesn't know for sure either.
And since nothing predictive can be gained from one, my last MRI was my
last MRI!!
magpie
D_Fru...@ndersnat.ch
On Dec 19, 1:18B pm, D_Frumiu...@ndersnat.ch wrote:
> > Alas, those two things have yet to appear. I hear that there are
> > *finally* some objective scientific tests of LDN underway, but the
> > results are still some time off.
> > There are some on this group who believe strongly in LDN, and others
> > who believe strongly that in the other direction. You will probably be
> > sorry if you get into it with either side - a little bit like what you
> > would experience if you started in on either side of the question of the
> > usefulness of helmets over on the bicycling groups.
> LDN has been around for over 20 years
And has never been scientifically tested as a treatment for MS. But
you are living proof of what I said about people believing strongly in
it anyway - and about regretting getting into a discussion of it.
> safe, effective, inexpensive
LDN's safety is not questioned, and you have never heard me question
it. Inexpensive, again I agree. Effective? I have asked you
repeatedly to cite an objective, scientific study that demonstrates
that, and you know perfectly well that you can't and you haven't.
You may recall, however, that I have welcomed long-overdue news that
someone is *finally* doing a scientific study of LDN. I eagerly await
the results of that study, whichever way they go.
> much anecdotal evidence showing it successfully treats MS
Exactly. *Anecdotal* evidence. A few weeks ago I had a conversation
late at night with my daughter. Immediately after I said goodbye and
hung up the phone, there was a flash of brilliant light outside my
window, and a loud boom. And there you have it: anecdotal evidence that
talking with a PWMS on the phone late at night causes huge meteors to
enter the earth's atmosphere and produce bright light and sonic booms.
> of course you slam it
Oh, "of course." (Why do I think that phrase says more about you
than it does about me?)
Asking for objective evidence that a treatment works is not
"slamming" it. It says something about your mindset that you say it is.
You also seem to forget that a while back I quoted a neurologist who
says that if LDN is working for you, you should keep taking it.
> and what do you push?
> CCSVI!
> something that has just been discovered and totally unproven
"Unproven" doesn't seem to be a problem with you when it's LDN that's
unproven.
I seem to remember using, and highlighting, the word *possible* in my
mention of CCSVI as a *possible* cause or symptom of MS. Still, Dr.
Zamboni already has something that no LDN advocate has ever shown me:
objective (if preliminary) evidence. He has done angiograms of MS
patients, and found jugular constrictions in nearly 100% of them. In
the patients who have received his treatment, a very high percentage
have experienced marked, measurable improvement.
Clearly, Dr. Zamboni's results, while promising, cry out for
replication and much, much more study. Do the vein kinks appear in ALL
MS patients? If there people with similar constrictions who do not have
MS, why don't they? Do the constrictions show up in PPMS and SPMS as
well as in RRMS? What of the minority of patients who have received the
treatment and not improved? Why didn't they? Dozens of other questions
also need answering. Still, I can't deny that I find the preliminary
observations intriguing and promising.
> and then you promote the NMSS?!!
> they are an MS'ers worst enemy
What I know about the MS Society is based on my experience with them.
They are empathetic, they lobby Congress for funding, they support PWMS,
they provide for needs from cooling vests to home care. Every year the
local chapter around here raises over two million dollars for care and
research. Evidently you have a beef with them, but given the attitudes
you show in your posts, it would take a lot more than your antipathy to
convince me that they're "an MS'ers worst enemy."
Bill
__o | Better a cruel truth than a comfortable delusion.
_`\(,_ |
(_)/ (_) | --Edward Abbey
Peter Black
wrote:
>You may recall, however, that I have welcomed long-overdue news that
>someone is *finally* doing a scientific study of LDN. I eagerly await
>the results of that study, whichever way they go.
Also, I believe that negative results are not widely reported. Tests
might have already been conducted on LDN, but, if negative, would not
have been published in any of the major publications.
Tick
remarks about the NMSS. As a member I've found them invaluable
through the years. The help from the, 'mother ship', so to speak, has
allowed our little chapter here to offer many services that wouldn't
have been available otherwise. The money we send them aids with 'the
big picture' while the trickle down supports us.
The good the Society has, and is, doing is well documented. The
virulence I've heard for over a decade always seems to be anecdotal
gibberish from folks with an issue.
Tick
*****Don't Cry Because It's Over, Smile Because It Happened*****
evilzona
>
> - Show quoted text -
Yeah, the issue is they have MS tickwad.
I've heard a LOT of negative stuff about the nmss ya dumass.
You're a fucking fool!
Go have another beer.
evilzona
>
> - Show quoted text -
of course, maybe if you werent so busy kissing everybodys asses like
you do on this
forum, you'd actually notice what was going on.
Peter Black
>> (_)/ (_) | � � � � � � � � � � � � � � � --Edward Abbey � � � �
The MS Society purchased a $2500.00 wheel chair for me. It permits me
to get out of bed for a little while.
D_Fru...@ndersnat.ch
Sadly, you might be right. Scientific evidence about LDN needs to be
publicized, whichever way it goes. But I like to think that there are
enough interested parties right here on this group that if one of us
heard something, we would all know in a very short time.
Bill
__o | An animal will leave a carcus after he gets
_`\(,_ | his belly full, but you never see a banker
(_)/ (_) | do that sort of thing. --Butch Cassidy
D_Fru...@ndersnat.ch
> On Jan 1, 6:40�pm, Tick <olt...@msn.com> wrote:
> > Bill, �your observations are right on the mark. �Especially the
> > remarks about the NMSS. �As a member I've found them invaluable
> > through the years. �The help from the, 'mother ship', so to speak, has
> > allowed our little chapter here to offer many services that wouldn't
> > have been available otherwise. �The money we send them aids with 'the
> > big picture' while the trickle down supports us.
> >
> > The good the Society has, and is, doing is well documented. �The
> > virulence I've heard for over a decade always seems to be anecdotal
> > gibberish from folks with an issue.
> >
> > Tick
> >
> > *****Don't Cry Because It's Over, Smile Because It Happened*****
> >
> >
> >
> > > � �What I know about the MS Society is based on my experience with them. �
> > > They are empathetic, they lobby Congress for funding, they support PWMS,
> > > they provide for needs from cooling vests to home care. �Every year the
> > > local chapter around here raises over two million dollars for care and
> > > research. �Evidently you have a beef with them, but given the attitudes
> > > you show in your posts, it would take a lot more than your antipathy to
> > > convince me that they're "an MS'ers worst enemy."
> Yeah, the issue is they have MS tickwad.
> I've heard a LOT of negative stuff about the nmss ya dumass.
> You're a fucking fool!
> Go have another beer.
At the biggest MS Society event that I attend regularly there are
usually between 50 and 100 MSers in attendance. I have yet to hear any
of them say what you say about the Society. Same goes for the monthly
seminars I go to, which are typically attended by ten to twenty. I'd
have to say you're outvoted on this question.
You have "heard a LOT of negative stuff about the nmss," but you
can't or won't tell us what it is. Instead you resort to your usual
pointless insults. It is entirely understandable that you feel that
your having MS is unfair. I won't argue with that. The difference
between you and most of the PWMS I know is that you have turned your
suffering into anger at, well, nearly everybody. People come here to
share their pain, their problems, their knowledge, and their hope. They
come for sympathy and empathy. They get it from most of the users.
From you they get profanity, name calling, and insults. Why you choose
to offend and drive away people who know and share your problem, and who
could offer you that same support, I do not understand.
Most of the PWMS I know have turned their pain in more positive
directions. As one guy put it, "It's not what life does with you, it's
what you do with life." Or as my daughter likes to say, "I have MS, but
MS doesn't have me."
Bill
__o | Profanity is the effort of a feeble brain
_`\(,_ | to express itself forcibly.
(_)/ (_) | - Spencer W. Kimball
evilzona
>
> - Show quoted text -
ok billy, now kindly fuck off
evilzona
>
> - Show quoted text -
50 to 100 ms'ers
10 to 20.
wow billy, you got the numbers behind you dont you?
outvoted..BY WHO? YOU?
you dont even have ms asshole.
you and other members here have such a disgusting sanctimonius
attitude, its sickening.
D_Fru...@ndersnat.ch
> you dont even have ms a******
Some of the finest obstetricians in the world have never had a baby.
evilzona
I'm sure the best ones dont pretend to know what being pregnant feels
like.